What happens when one family has to cope with multiple cancer diagnoses? When Jessica began to experience persistent abdominal bloating, she couldn’t help but worry. As the mother of a teenager diagnosed with leukaemia, she knew first-hand the importance of paying attention to your body. So when her GP wrote off her symptoms as endometriosis, she was determined not to let it go…
I think it’s safe to say that cancer was weighing pretty heavily on my mind when I first made an appointment to see my doctor. At the time, my 16-year-old son was undergoing treatment for acute lymphoblastic leukaemia, so when I began experiencing frequent abdominal pain and constant bloating, the first thing I asked my GP was whether my symptoms could be a sign of cancer.
Despite my concerns, I was sent away with iron tablets and reassured that the pain and bloating was probably due to the stress of events, or a recurrence of the endometriosis I’d been diagnosed with when I was 18.
Within a few months however, I was back, with worsening symptoms along with rectal bleeding. My GP sent me for an internal and abdominal ultrasound but although the scan showed some ‘free fluid’ in my abdomen, the scan showed my ovaries were clear and so no red flags were raised.
As the months went on things just got worse. I felt full a lot of the time and my tummy bloating never seemed to disappear. I know many women bloat around the time of their period, or due to food intolerances, but this was different. It was a specific type of bloating; it didn’t go away. I was exercising and losing weight, despite my growing tummy.
That summer, we went on holiday, and on the trip I noticed some bowel changes. A few weeks later I went away to see my mum in Devon and my young daughter asked if I was having a baby!
During our stay I became very sick, I was unable to eat and so went to the nearest A&E. They couldn’t find anything wrong, only offering me pain relief and a pregnancy test - which was negative - and I was free to go!
It was during this time I reluctantly started googling my symptoms, despite knowing it’s not a good thing to do. I googled:
I knew from my research I needed to go back to my GP and ask for a CA125 blood test. People are often negative about googling symptoms, but it saved my life.
I went back to my GP and said that I had all the signs of ovarian cancer and that I wanted a CA125 blood test. He examined my huge swollen tummy, but said due to my age they wouldn’t routinely offer the test. He subsequently left the room to find out if it was appropriate. Because I had mentioned ovarian cancer, they agreed to the blood test the following Monday.
After a very painful weekend, when I couldn’t eat, lie down and was becoming more breathless, I returned for the blood test. This time I asked to see a GP nurse who I felt knew me.
I said, “I think I have ovarian cancer, look at my stomach, this is not right” - I just wanted her to listen to me at this stage.
Fortunately she was quick to diagnose ascites (which is the accumulation of fluid in the tummy containing cancer cells) and I was referred to the acute medical ward at my local hospital. I took this picture to show how bad the bloating was - I wanted to raise awareness. I want women to see it.
Things progressed quite quickly from there and I had six litres of fluid drained from my abdomen. A CT scan revealed multiple tumours, the CA125 blood test was in its thousands. Although my ovaries were clear, I was initially diagnosed with Stage III ovarian cancer until a biopsy revealed it was likely primary peritoneal cancer, which is treated in the same way.
My initial reaction to the diagnosis was shock and disbelief. We were recovering as a family after our son’s illness, I had given up work while he was poorly, but as he had finally reached the maintenance phase of his treatment, things finally seemed to be settling down for us and I was even considering going back to work. But it was not meant to be.
I felt truly devastated and worried about my future.
Initially, I had four rounds of carboplatin and paclitaxel chemotherapy, but opted to delay surgery until January to spend Christmas with my family. I was lucky that the chemotherapy had shrunk the cancer enough to be offered specialist ‘ultra-radical’ surgery. This involved a 10-hour operation to remove all evidence of cancer. Surgeons operated on my spleen, pancreas, diaphragm, bowel, stomach and of course a full hysterectomy. I also had fluid in both lungs, which at that time didn’t appear to contain cancer cells.
My surgery was successful and I went on to receive a further three rounds of chemotherapy before finally receiving the fantastic news that there was ‘no evidence of disease’.
I decided with good advice from my oncology team to go away and enjoy my current status and enjoy time with my family and friends, and this I did!
Target Ovarian Cancer
During my treatment I was keen to find out as much information as possible, from clinical trials and coping with side effects of chemotherapy, to dealing with my mental health. My clinical nurse specialist is wonderful, along with my consultants, they never make me feel their time is limited.
Clinics are so busy and you often come away with more questions than you went in with. This is one of the many reasons that Target Ovarian Cancer is so good – you can get loads of information, under one umbrella, in your own time. I’m confident their evidence sources are reliable and that is important to me as I have a cancer that is particularly difficult to treat.
It’s a year since my original diagnosis and sadly I faced an early recurrence, meaning I am back on chemotherapy. However, I am determined to continue to raise awareness by sharing my symptoms. People don't like to talk about gynaecological cancers because there’s an element of embarrassment about treatment and its effects. My cancer is incurable – which is difficult to deal with – and while I’m not currently in the happy place I’d like to be, sharing my story means a lot to me.